Change is not a dirty word/ Motivation for lupus warriors

Who you gonna call (for health emergencies)?

It happens to everyone at some point: it’s 2am Sunday morning at your back or your side or your abdomen starts screaming with pain. Maybe you break out in cold sweats for no reason or your hands change color and get all tingly – or like what happened to me in my early teens, you start having heart palpitations in the middle of a cousin’s holiday party. What do you do? Do you run to the nearest ER? Try to call your doctor to ask for advice? Run to google your symptoms and find out if you’re dying?

When you have lupus, symptoms new and old can strike suddenly and vanish again just as quickly. And true to Murphy’s Law, if symptoms can strike at the worst possible time, they will. Weekends, holidays and the wee nightly hours are times when symptoms can strike, but help is limited. Instead of waiting for lupus to whack you upside the head while you’re out with friends, it’s good to have a plan in place. Knowing your options ahead of time can save you the stress of wondering what to do, can save you a trip to the ER that you don’t need, and can save you money. Below are the top options and resources available to help you put your plan in order.

Go to your nearest Emergency Room

This is the most extreme option, and also the most common. It makes sense that you’re having sudden pain or new symptoms, and your doctor isn’t on call, that you would go to the ER. For lupus patients, however, that isn’t always the best option. In my experience, going to the ER has always resulted in the same few outcomes. There’s a huge lack of communication – even if it’s a hospital I’ve been to before, it seems that my records are never looked at. The ER doctors are never informed of my lupus, so I end up having to explain things over and over. Because of this ignorance, I’ll have to stay overnight because my bloodwork is totally mistranslated – it’s “normal” for me, but way in the red zone to the docs. More than once I’ve had to repeatedly refuse treatment for lupus symptoms that are already being managed with medication. Also, there are huge stretches of time where there is no treatment, no doctor visits, no updates from the nurse…about 50% of the time, all my symptoms have vanished by the time anyone gets around to seeing me! And finally, there’s the bill. Even if you have insurance coverage, it can still add up.

So, is the ER a complete waste of time? No, of course not. If you’re having severe pain or a condition that can turn lethal quickly (like heart complications are an example), then it’s better to suck it up and brave the ER instead of trying to tough it out on your own. But don’t wait – talk to your doctor early and often about what to do if a symptom acts up and he’s not available. Ask if certain symptoms can be fatal if untreated. When it comes to your health, communicate, communicate, communicate.

Find an Urgent Care clinic

Lesser-know, but very vital are “urgent” care clinics. Due to the long wait times and severe overcrowding in Emergency Rooms, more and more of these are popping up. They can cost a lot less than the ER and have much shorter waiting times, but they do have their limitations. First of all, UR’s (or UC’s), while open longer than most doctor’s offices, are usually not open 24/7 like an ER is. They also might not be equipped to handle heavy-duty emergencies such as blood transfusions or immune-suppressant therapy. On a good day, it might be a good idea to check out your local urgent care ahead of time and ask what they’re able to handle. Generally, UR is probably your best bet for minor injuries like a sprain or fracture and non-lupus issues like a cold or flu. Of course, with the chameleon-like nature of lupus symptoms, try to find an Urgent Care center close to a hospital just in case that “flu” you thought you had turns out to need more serious treatment.

Call your doctor

In my experience with doctors, they’re rarely off the clock. Even after their office hours end, they can still be reached. Some may leave pager numbers for messages or even have partner doctors who can see patients when they aren’t around. Some are even willing to contact you via text or email. Ask ahead of time how (or if) you can reach your doctor after office hours.

If your doctor drops off the face of the earth once the office closes (don’t be mad – they need their quiet time too), then consider some of the newer online ask-a-doctor websites. Sites like HealthTap and Dr OnDemand, promise personalized attention from a qualified doctor, in your home, on your time. There’s a cost of course, but it may be well worth it to have a backup doctor literally in your pocket whenever you need someone qualified to talk to, or to even give another view on treatment options.

Call a nurse line

If you have insurance, then you might medical access available to you that you don’t even know about. Some insurances have 24-hr nurse lines that you can call to ask any questions you might have. For me personally, they’ve never been helpful, but it’s worth a shot if you have general “is this a symptom of_?” type of question. When my kidneys failed my insurance assigned me a dedicate nurse who specialized in end-stage renal disease. She did regular check-ins and helped me get information and materials. Check with your insurance to see if they have a program specifically for chronic illnesses that include extra support and/or materials. If your insurance has no such things, you can try an independent nurse line such as REMSA/Nurse Help Line or Nurse Hotline (if you know of any others, let me know in the comments!). Also the same kinds of apps that connect you to doctors, can also be used.

DIY

Finally, is seeking no help and doing whatever you think is best to heal yourself. Now this might be an alternative treatment or just hoping the symptoms will pass. I’ll level with you – I’ve done this. Chances are you’ve done this on occasion. Just the idea of being stuck in the ER for who knows how many hours, constantly explaining the same things to every new face that comes by makes staying home and toughing it out seem like the better option. Or you might just feel too sick to attempt the trip. It’s never a good idea to not tell anyone what you’re feeling. It’s just not. For all our experience, we are not doctors and lupus isn’t called “the great imitator” for nothing – things may be more serious than you think. So leave this as a last resort. Always reach out to someone…and I mean someone qualified people. Asking “what do I do?” on a Facebook page is not a good move in an emergency situation.

Making Your Plan

Now that you know some of your options, it’s time to put together a plan. It can be as simple as the three steps below, or as well-thought-out as you want it to be.

Evaluate symptoms – Decide if the symptoms are severe enough to seek help. If they aren’t (and you’re being honest with yourself- not just hoping they aren’t serious), then rest up and see your doctor when you can. My rule of thumb is if the symptoms scare me, then I call my doctor and get help.

Choose a first choice and backup – I think calling your regular doctor is always a good first step. They know your case better than anyone else and can give you the most appropriate advice. If that falls through, then I might go to my local ER. Have a backup plan or contact if your first choice doesn’t work out.

Have info handy – Don’t wait, put together a list of contacts now. Download the app today – do whatever to be prepared. It probably won’t take as long as you think to get a few numbers to together. Then keep the list in your wallet, on your fridge and anywhere else where it’ll be easy to find.

2015 Top Lupus Blog – Healthline (3 years running!)

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About Me:

A breach-birth baby came flying into the world not only butt first, but folded neatly in half (there’s a great picture of my legs flying up and kicking myself in the head), I’ve had an unfortunate series of medical mishaps ever since. However, the pig-headed stubbornness of my Puerto Rican ancestors was passed down to me in spades and once in my nearly-crippled-with-arthritis teenage years, I made myself a promise. A really big promise.